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Home » Rare diseases » New HAE guidelines set more advanced standards for patients

Luke Robinson

General Manager, UK, Ireland and Nordics & Head of EU Marketing,
BioCryst Pharmaceuticals, Inc.

Over recent years, there has been an increased level of research and development into the rare genetic condition hereditary angioedema (HAE).

As a result of heightened research, there are more HAE treatment options available that can help to both prevent and control the disorder.

The severity of HAE

“People with HAE are prone to attacks of painful swellings in the skin or mucous membranes, which can affect the limbs, face, abdominal areas and throat. Untreated swellings of the throat can be life-threatening,” explains Luke Robinson, General Manager UK, Ireland and Nordics at BioCryst Pharmaceuticals, a biotech company that is addressing unmet needs of people with rare diseases.

One of the challenges of HAE is its unpredictability. “Attacks can be triggered by an injury or infection, surgery, dental treatment, certain medicines, pregnancy and stress,” says Robinson. “Where there is no apparent cause, it could be triggered by stress or anxiety.”

HAE is a lifelong condition, but there are treatments.

Treatment options

International guidelines recommend that patients are assessed at every visit to identify the most suitable course of treatment.

HAE is a lifelong condition, but there are treatments. For acute attacks, patients are given subcutaneous injections, or — if that fails — intravenous therapy. Some patients carry the medicines with them and are trained to self-administer, but people who have frequent attacks may qualify for prophylactic treatment.

The mainstays of an effective acute or prophylactic treatment include factors such as ease of administration, speed of resolution of swellings and the degree to which attacks are prevented or reduced in severity.

Advantages for patients

Robinson says: “For patients, an effective treatment plan means better control of the unpredictable nature of HAE which could improve their quality of life — physically, mentally and emotionally.”

“BioCryst is committed to supporting people living with rare diseases, including HAE, by helping them manage the obstacles they face in their day-to-day life.”

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